Life

For the past few months year or so, I’ve bounced around different ways to phrase portions of this blog post. I’ve debated how to address the relative disappearing act this blog has performed. I’ve thought a lot about what this absence means, and why it’s happening. I’ve wondered if this blog serves a purpose beyond reminding me of the diabetes (and patient) advocate I once was. I’ve feared facing the emotions that have kept me from engaging this empty draft and the blinking cursor that taunts me.

A lot of what I’ve been dealing with, or at least what I think I’ve been dealing with, has nothing to do with diabetes, or this blog. As I try to make sense of this, whether or not I write anything here is of little consequence. Honestly, I’m using this blog as an opportunity to deflect. It’s not about this blog. But, this blog sure does make for a great metaphor, representing the hesitation and self doubt I’ve been battling.

I’ve got three podcasts now. You remember Just Talking? That’s still going. Then there’s 2 Big Topics, my monthly pop culture chat with my longtime friend and podcasting mentor, Parris Lilly. And just a few months ago I started a new show with my sister called Mark All That Apply where we discuss topics related to identity and race from our perspectives as multiracial siblings. I’ve certainly got a lot to say. And it’s not like I’m lacking platforms to share my thoughts and opinions.

And earlier this month I joined Tidepool as their Community Manager. This position feels like a culmination of ideas and opportunities in my patient advocacy journey that started when I attended Stanford Medicine X for the first time in 2012. Being part of this team, and this mission is humbling and inspiring and I’m beyond excited to share what we’ve got planned for the diabetes community.

And yet, despite all that’s happening, I feel incomplete. All of those links don’t really mean much when I come back to a basic question: How am I? I’m not sure.

There’s something else nagging me. There are words and phrases I’m afraid to confront, determined to avoid, and hopeful to move past.

I don’t know what I’m going to do about all of this. I’m not sure what I can do.

But I’ll keep plugging along until I figure it out.

Image (linked) via gipy.com

According to the revision history of this post, I started writing everything above that line on March 30, 2017, and came back to it again in late April. And now it’s November. I’ve debated whether it’s worth publishing what I wrote. I’ve reread it a few times since it last sat in a draft status, wondering what it all means. I think I’m afraid to admit the source of everything above that line might have been depression or some similarly unsettling reality. Admitting your flaws is tough. Admitting flaws like that is something else entirely.

As previously mentioned, I continue to wonder what to make of this online space I carved out for myself, unsure if it’ll ever feel like home again. I would love to find a new path forward for whatever it is I do best. I think the patient advocacy portion of my brain functions best when I try to address challenging topics in more than an image caption or 140 280 character tweets. But I feel a lot of resistance to change.

I don’t think the answer is officially saying goodbye to this space, and registering a new URL. I think that would do a disservice to the growth I’ve had since I started writing about my diabetes. Once I sort of figured out who I was (or who I was supposed to be), I was comfortable with the pivot away from “all diabetes, all the time”. Maybe an informal rebranding is in order. There have never been any rules etched in stone dictating how I use this space, and there’s no need to deviate away from that approach now. But I think a new tagline may be in order. Something along the lines of “patient advocacy viewed through the lens of my diabetes”…

I think I can work with that.

I can’t promise when I will be back, but I will promise to not give up on all of this. There’s plenty more for me to do, I just have to focus.

For the past couple of weeks I’ve been sharing past episodes of my podcast featuring people I’ve met through or because of Stanford Medicine X. I still view my attending that conference four years ago as a fluke – Nick Dawson sent me a direct message on Twitter recommending that I apply, and after initially being waitlisted, I received a formal invitation to fly to California and stand shoulder to shoulder with some of the fiercest patient advocates around the world. Much of my 2012 Medicine X experience shaped my growth as a patient advocate within, and beyond the diabetes community. I started seeking podcast guests further beyond my comfort zones in an effort to learn and share more diverse stories. My Disease Secret, a platform which hosts the anonymous sharing of secrets, fears, and emotions from people impacted by diabetes, cystic fibrosis, chronic pain, cancer, sleep disorders, IBD, multiple sclerosis, mental health issues, lupus, or arthritis, would not exist without my participation in Medicine X. It may sound naive, but before Medicine X, I never recognized that various patient communities are fighting the same battles, that these advocates are working for the same goals – generally speaking, if you replace a couple of nouns and you can define the mission for nearly every patient community advocate.

Over the past four years I’ve spoken with CEOs of disease advocacy groups and non-profit organizations, Presidents of healthcare device manufacturers, entrepreneurs, and patient advocates representing an equally diverse range of diseases and advocacy methods. I’ve hosted conversations among educators, students, and healthcare providers. The fun thing about this journey I’ve been on is knowing it can go as far as I choose, and the learning potential is virtually infinite. While there’s so much I’ve already learned from all of these conversations, the possibilities in the months and years to come are equal parts exciting and terrifying.

Exciting because sharing these stories reinforces my beliefs as an advocate. Story sharing is what I do best. Everyone has a story to tell, and every story is worth telling. Through my podcast, and other online efforts, I’m just doing my part to help spread the word.

Terrifying because I don’t know what opportunities await me. Because there’s always that lingering doubt that resides inside me before I press record on a new conversation. The impostor syndrome that envelops me before I step on stage is suffocating, but I’m getting better at letting those moments wash away just as easily as they arrive.

When I look back on my contributions to Stanford Medicine X, I hope others see what I brought to the broader conversation. As I took on a bigger leadership role within the conference, my focus turned to the incoming ePatient delegates. I did my best to make sure they felt comfortable in a space that can be overwhelming at first by offering fist bumps, high fives, and words of encouragement to anyone who needed them. The stories of these delegates are the defining moments of each conference, so I did my best to ease the tension and make everyone feel as comfortable as possible to ensure their respective moments in the spotlight were the best they could be.

Stanford Medicine X represents a tremendous professional and personal growth for me. Every year I arrive with nervous butterflies and leave with my heart full of love and head full of ideas. I can’t wait to see what this year’s conference brings.

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And now, I have to apologize. The audio you’re about to hear should have been shared with you a long time ago. In June, Dr. Larry Chu and the rest of the Medicine X team hosted an event at the White House. Yes, that White House. The focus of the event was engaging participants as partners in research in support of the President’s Precision Medicine Initiative. In the spirit of Everyone Included, the framework for healthcare innovation, implementation and transformation based on principles of mutual respect and inclusivity, the details of the workshop were developed collaboratively with patients, providers, researchers, entrepreneurs, and White House staff.

Attendees represented a who’s who of patient advocates, innovative professionals, academics, and passionate individuals among global healthcare conversations. The workshop was designed to identify what’s working in research, strengthen the community of innovators in this space, and accelerate progress of engagement in research. In some ways, this event could be seen as the pinnacle of achievement for Stanford Medicine X – a conference that has come to define inclusivity and respect across the entire healthcare spectrum designing a collaborative conversation featuring singular patient perspectives, far-reaching federal policy perspectives, and everyone in between. After the workshop concluded, I collected feedback and thoughts from some of the participants with the hopes of sharing them in a future podcast.

However, I struggled to wrap my head around how to frame this conversation. Really, I feel there’s nothing I could say to properly articulate the magnitude of this opportunity. I remember when it used to feel special to sit in a room where patients and providers were treated as equal, now that’s expected in every healthcare conversation I participate in. I used to wonder what good all of our advocacy efforts could truly accomplish in a complicated world of rules, regulations, and politics – but now we’re discussing the future of participatory medicine and research at the White House.

So here’s my pitch to you. If you want to participate in the conversation on Twitter, look for people using the hashtag #MedX. Follow them. Ask questions. Engage. These types of conversations only work when everyone listens, when everyone participates, and when everyone is included.

Has it really been a year since I tried to look ahead? For months I’ve been battling ideas that seem great on paper, or even within the relatively safe space of a “test the waters” Facebook post or Twitter message, but an equally crippling inability to act upon them with any certainty. For months I’ve seen stories and issues arise that generate plenty of thoughts, but no formal sentences worth sharing. For months I’ve thought about this blog, what it’s done for me over the years, what I think it’s done for others over that same time, and how I don’t want this URL to become a distant memory of blogrolls across the diabetes online community.

I think there’s reason to be proud that I’m paying more attention to topics like transgender rights, race issues, domestic violence, and validation within various patient communities. It speaks to a maturation of sorts. But if I still believe at my core, I’m a diabetes advocate, why is it so hard for me to prove it to myself that I still have what it takes to contribute?

Why have I been thinking about writing this blog post for three weeks but only now have the strength (is it really strength?) to say something?

I’m not going to make any promises about posting frequency because, quite frankly, I can’t stomach the disappointment when (if?) I don’t live up to that timetable. But I’m here, right now, to say that I’m still around. I still want to contribute to the discourse, and I will try to be more visible.

So, the task for now is to dust off my keyboard and start a figurative cleaning of sorts. Not a fresh start, but comfortable return. Until then, here are a couple of links to bide the time. Continue reading →

Two years ago I created an online space for people to anonymously share their thoughts, fears, and experiences about their life with diabetes. Since then I’ve expanded this idea to other patient communities including mental health, cystic fibrosis, chronic pain, arthritis, and lupus. Today that expansion continues with the debut of My Multiple Sclerosis Secret.

When I look at the conversation around MS online, the majority of tweets, status updates, and gifs revolve around the struggle to validate the experiences of an invisible illness. Because there are not many external manifestations of your disease, a lot of time and energy goes into defending basic truths about your health and wellbeing. My hope is that My Multiple Sclerosis Secret can become a space to help explain the realities of multiple sclerosis. My goal is to build a safe place for sharing within the multiple sclerosis community while simultaneously providing an opportunity for others to learn from people impacted by MS.

My Multiple Sclerosis Secret is safe place to share your multiple sclerosis secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.

Two years ago I created a site designed to host anonymous secrets from the diabetes community. The goal was to provide a safe place for people to share what they were feeling and experiencing without fear of stigma, shame, or judgement. But battling stigma and judgement is not unique to the diabetes experience, and that is why my expansion of the My Disease Secret platform brings us here, to the launch of My IBD Secret.

In my conversations with IBD advocates, I’ve learned a lot about the struggles for acceptance and validity not only within the broader patient community, but with society at large. The common “you don’t look sick” trope often comes into play as I read the horror stories of people being accosted for using disabled parking spaces despite being legally afforded the right to use them, or the dirty looks received when preboarding a flight because you need extra time to make sure everything is in order. Your struggles are real. And while I may not have the same experiences as you, I certainly understand what it’s like to live with a disease that people generally don’t understand or have a wildly off-base perception of the realities of what it takes to live a “normal” life.

My hope is that My IBD Secret can shed some light on what it’s really like while also offering the IBD community a safe space to share their experiences and emotions – a safe place to share your IBD secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.

To help make sure I get this right, I’ve partnered with some of the smartest and most passionate advocates I know, Carly Medosch (diagnosed with Crohn’s at 13), Duncan Cross (diagnosed with Crohn’s at age 17), and Kelly Crabb (diagnosed with Crohn’s at 16). With their knowledge and experiences, together we will do our best to make sure this site treats the IBD community with the respect it deserves.

“It is deeply disturbing that creating new ways to be anonymous or show how ashamed being sick makes you feel is something you’re growing. This is not advocacy. This is making self hatred an expectation of being sick.” (Submitted to My Disease Secret)

I created My Diabetes Secret because I saw an opportunity. I saw a chance for people to share how they really feel without needing to tie their words to their identity. Like screaming at the ocean, sometimes it’s simply enough to get something off your chest and move on. I didn’t see this form of sharing as hiding behind the anonymous logo that heads these sites, but as a collection of individual moments of realization, of self actualization, of owning their lives for better and worse. The likes and reblogs each submission receives are not a digital statement suggesting the pain and struggle shared is a good thing or one to be expected, but respecting and appreciating the act of sharing itself.

I’ve never claimed to be an expert in all of this. I think Tumblr is a pretty neat platform, and I believe the Internet has a tremendous role to play in the well-being of each and every person impacted by a chronic disease or illness. I feel that promising anonymity to anyone who chooses to share whatever they are feeling not only builds trust among all who visit this site, but it ensures the utmost sincerity with each and every character, word, sentence, and submission. In asking people to open up their hearts, minds, and souls, I’ve been greeted by hundreds of examples of the raw emotion associated with diabetes, or cystic fibrosis, or arthritis, or depression.

But you’re right, anonymous. This is not advocacy. This is merely a small component of what patient advocacy needs. Beyond the fundraising and the facts and the politicians, the voice of the patient is paramount to what all of us hope to accomplish be it passively or actively. The voice of the patient comes in many forms. Written testimony and perspective via email to a local state representative, participating in local fundraisers, literally calling upon Congress to increase funding for crucial research, changing your profile picture to sync with an awareness campaign. All of those examples have their place in the broader advocacy effort we all engage in. Just because someone’s identity is hidden, and their name is Anonymous does not mean their input is any less meaningful. The sum of these sites may not equate to any form of advocacy you are partial to, but each one of these secrets adds to the broader narrative that we are not doing enough.

We do, however, disagree on your last assertion. These sites do not promote self hatred, or indicate that self hatred is an expectation of being sick. These sites remind anyone and everyone who visit that it’s okay to not be okay. These sites remind anyone and everyone who visit that you are not alone.

I appreciate your concern, anonymous. And I value your feedback. If you want to get in contact with me to make sure we are all doing right by the broader patient community, you can find me at mydiseasesecret@gmail.com. I welcome a continued dialog on how we might improve the experience on these sites and take what is shared to make lives of all patients and patient communities better.

This is not advocacy. This is connecting the dots between what we know, what we think we know, and what we feel. This is learning from people with life experiences wildly different from our own and coming to the realization that we’re all in this together. This is compassion and honesty. This is empathy in its purest form.

Two years ago I created a site designed to host anonymous secrets from the diabetes community. The goal was to provide a safe place for people to share what they were feeling and experiencing without fear of stigma, shame, or judgement. But battling stigma and judgement is not unique to the diabetes experience, and that is why my expansion of the My Disease Secret platform brings us here with the beginning of My Lupus Secret.

I recognize that lupus is a big deal. I recognize that there can be struggles to legitimize your pain, your emotions, and the medication it takes to live a “normal” life – for however you define normal. I recognize that the recent revelations about Selena Gomez mean there’s an opportunity for acceptance and advocacy on a greater level while her story remains fresh in the public eye. But beyond that, I recognize that there’s a chance for the lupus community to help dispel some myths and misperceptions about what you all are going through with your words and actions each day. My hope is that this site can help with that effort.

So here is My Lupus Secret. A safe place to share your lupus secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.